Intersing links
Genomics: Sequence sharing. Nature release about the books:
"The 1,000 Genome: The Revolution in DNA Sequencing and the New Era of Personalized Medicine"
Kevin Davies Free Press: 2010. 352 pp. ISBN: 9781416569596
"Here Is a Human Being: At the Dawn of Personal Genomics"

Misha Angrist Harper: 2010. 352 pp. ISBN: 9780061628337

 

What are the ethical implications of cheaper and cheaper sequencing technologies ?

The ‘thousand-dollar genome’: an ethical exploration

Dr Wybo J. Dondorp and Prof Guido M.W.R. de Wert
Monitoring Report Ethics and Health 2010. CENTRE FOR ETHICS AND HEALTH
Citation: "Health Council of the Netherlands. The ‘thousand-dollar genome’: an ethical exploration. Monitoring Report Ethics and Health, 2010/2. The Hague: Centre for Ethics and Health, 2010"
Ethics in Geuvadis

"To fill the gap between the technological fascination and speed, and the responsible implementation of genome sequencing, it is crucial that scientists participate early in the analysis of the ethical and societal dimensions of their work. This dimension is a lively axis of the work in GEUVADIS"

Anne Cambon-Thomsen, Inserm, Toulouse (France), in charge of ELSI aspects of Geuvadis

Ethical, Legal, Social issues (ELSI)

 

Europe has the capacity to play a key role in the integration of sequence data with related phenotypic information, to improve understanding of disease and advance diagnostics and therapy development.

This must be implemented in a responsible way and within an harmonised ethics framework that will ensure that these technologies are used for the service of patients and in the respect of fundamental values.

The present and developing capacities of sequencing are challenging also the classical ethical framework and its various translations into the health systems of European countries. Of particular interest in this context are the challenges with respect to privacy, data protection, and availability of sequence data.

The general objective will thus be to map and coordinate activities in the ELSI domain that are relevant for the issues of phenotype prediction from sequence variation, taking into account passed EU projects/infrastructures/consortia (EUROGENTEST, PHOEBE, ENGAGE, GENCODYS, BBMRI, ELIXIR, TECHGENE, GEN2PHEN, PHGENII, ICGC, P3G)

This will allow to propose a relevant framework so that sound guidelines can be proposed, debate can occur as well as pilot actions.

ELSI specific objectives

 Specific objectives:

• To ensure of the ethical management of all relevant steps in the project

• To identify specific ELSI issues relevant to phenotype prediction from sequence variation in various clinical situations, from the experience of the partners and from bibliographical work

• To map these issues among those already well addressed with established ethical and legal frameworks in genetics and to identify the gaps and difficulties on the three levels (ethics, law, social impact and acceptability)

• To coordinate with existing relevant ELSI studies initiatives

• To organise in a coherent way and as tools easy to use for the scientific community updated overviews of existing ethical guidelines and legal requirements

• To facilitate the involvement of young and senior scientists in societal debate (collaboration with WP7)

• To propose policy guidelines for implementation of phenotype prediction from sequence variation into health systems

• To propose an analysis and a white paper on direct to consumer proposal of DNA sequences

• To propose training programmes in relevant ELSI aspects (in collaboration with WP7)